Category Archives: Patient stories

Plymouth girl faces cancer with grace, determination

September is Childhood Cancer Awareness Month. (iStock photo / Getty Images)

September is Childhood Cancer Awareness Month. (iStock photo / Getty Images)

At first blush, Justice Jackson comes off as being shy and reserved. With more investigation, you quickly realize that it’s just her polite and respectful nature and it masks an accomplished young woman who recently fought cancer head-on.

Justice, 17, was diagnosed with a form of ovarian cancer in January. She underwent three sessions of chemotherapy, each session lasting about five days, under the care of her primary doctor, Kris Ann Schultz, MD. She currently has no additional chemo sessions planned.

Her mother, Regina Lester, talked about her daughter in loving terms.

“She really is quite amazing. She handled the whole thing a lot better than I did,” Regina said. “While I was emotional and scared, I never once saw Justice cry, never. She just put her head down and worked her way through all the scans, needles and chemo. At the same time, she continued to help around home and work. She just did it, and I am so proud of her.”

Her accomplishments aren’t limited to her role as a patient. She also is a top student and athlete and was able to maintain relative normalcy throughout her treatments. She attends Armstrong High School in Plymouth, where she participates in swimming.

There’s mutual admiration and love between this mother-daughter duo. That love extends to Children’s Hospitals and Clinics of Minnesota and the care they received there.

“We love Children’s and everything that they have done for us,” Regina said. “They took such good care of all of us. They explained everything and had a plan to get Justice through it. We are so thankful that Children’s came into our lives.”

Subscribe to MightyIn addition to Dr. Schultz, Justice noted one of her nurses, Tammy, as someone who was a positive influence on her.

“Tammy was great,” Justice said. “She took the time to play puzzles with me, encourage me and just be there when I had questions. I really appreciated that.”

It’s hard to say exactly what life has in store for Justice. No doubt, there are big things ahead for this outstanding young woman who her mother calls “incredibly strong, both physically and emotionally.” We hope the world is ready because Justice definitely is going to make it a better place.

Children’s, PPB registry help Mankato boy

A pediatric cancer diagnosis is terrifying for any family, most certainly a young family from Mankato and their infant, first-born son.

Braydon Greiner turns 2 this month.

Braydon Greiner turns 2 this month.

Braydon Greiner, the son of Breanne and Brandon Greiner, was diagnosed with type 1 pleuropulmonary blastoma (PPB) lung cancer March 28, 2013, at St. Mary’s Hospital in Rochester when doctors found a cystic tumor the size of a grapefruit growing on his right lung.

“When Braydon was diagnosed with cancer our world crashed down around us,” Breanne said. “Life as we knew it changed forever. We researched PPB on the Internet and found out just how rare it is.

“Luckily, Braydon’s doctors at the Mayo Clinic told us about the PPB registry. I emailed Dr. Yoav Messinger of Children’s Hospitals and Clinics of Minnesota and we met the following week to discuss the risks, possible outcomes, available treatment plans and his experiences with similar PPB cases. Finally, our questions could be answered.”

Braydon turns 2 this month. He receives a chest x-ray every three months and a CT scan every six months to monitor the two type 1r cysts that remain in his lung. If the cysts show growth, he will start a chemotherapy regimen and possibly have surgery to remove them.

“We could not be more pleased with the care Braydon has received from Dr. Messinger, Gretchen Williams and the staff at Children’s,” Breanne said. “The communication between Dr. Messinger and Braydon’s primary physician, Dr. Smentek, in Mankato is impeccable. With PPB being such a rare cancer, we find comfort knowing that Braydon is being cared for by the leaders of The International PPB Registry.”

Subscribe to MightyAn adorable bundle of energy who could melt your heart in seconds, Braydon loves to play catch with his dad and fetch with his puppies. He also loves to zoom his cars around the house. His favorite thing to do is go for bike rides to the park so he can go down the slide. He is true fighter and inspiration.

“I expected the PPB registry to be a research group that wanted to look over Braydon’s files and have access to his charts,” Breanne said. “But the PPB registry does so much more than that; it also brings PPB families together.  The PPB registry helped a young, frightened family feel assured that ‘everything will be OK.’ We truly can’t thank you enough.”

Boy, 6, overcomes rare form of lung cancer

Evan Ginter, 6, loves art, drawing and recess.

Evan Ginter, 6, loves art, drawing and recess.

Life was normal for the first seven months of Evan Ginter’s life. Then cancer changed everything.

Evan’s primary pediatrician noticed something was amiss during a routine checkup in December 2008. She noticed that Evan experienced shallow breathing. A subsequent chest X-ray showed a large, dark mass on his right lung, and Evan immediately was admitted to Children’s – Minneapolis.

Evan Ginter enjoys riding his bike.

Evan Ginter enjoys riding his bike.

After a series of events that included CT scans and surgery, Evan’s parents, Lindsay and Jeremy Ginter, learned on Jan. 12, 2009, that Evan had a rare form of lung cancer known as pleuropulmonary blastoma type 1r.

Gone are the days when Lindsay and Jeremy constantly had to worry about Evan. He had an annual checkup in June, when he had an X-ray. Not only was it clear, it was the first annual exam in which he didn’t need a CT scan, too – a huge milestone. He’ll continue to be monitored with X-rays for the next two or three years.

The Ginter family, which includes his brother, Edward, said they feel blessed for the specialized care Evan has received at Children’s. Not all families are as fortunate, Lindsay said.

Thanks to social media, Lindsay follows the stories of others with Evan’s diagnosis.

Evan Ginter“For those who aren’t in Children’s network and don’t have the access to the PPB registry, there are so many questions. They just don’t have the direction we had. Since day one, we had personal cell phone numbers of our oncologists,” she said. “It’s really hard to imagine it any other way, and my heart goes out to the families that don’t have those resources.”

Evan, now 6 and still quite a character, just finished kindergarten, where he flourished.

He loves art, drawing and recess. He might even be an engineer in the making.

“Both my husband and I are insurance and accounting people, so our brains don’t work that way. He’s turning out to be much more creative than we are,” Lindsay said. “So we don’t know where he gets it; it’s good.”

There’s no doubt Evan has been through a lot in his short life. We celebrate alongside the Ginter family as Evan looks forward to starting first grade this fall.

Mother shares story of her hero

By Courtney Kile

When you think of a hero, chances are it’s someone who has helped you or inspired you – your parents, a teacher or a religious figure. My hero is about 3 feet tall, likes cheesy pizza and is obsessed with the PAW Patrol. He’s my son.

I married my husband, Robert, in 2009. Before the ink was dry on our marriage license, we were ready to make our duo a trio. Every month I’d take a pregnancy test, only to be let down. After nearly two years of infertility and loss, we were thrilled to find out I was pregnant! My dream was coming true.

Courtney Kile was pregnant with her son, Sullivan, in 2011.

Courtney Kile was pregnant with her son, Sullivan, in 2011.

At 20 weeks, we found out we were having a boy. His name would be Sullivan James, “Sully” for short. He was healthy, and everything looked great. Pregnancy was tough, and after being diagnosed with pre-ecclampsia at 37 weeks, doctors decided it was time for Sully to arrive.

I was prepped for surgery at our hospital in Duluth, Minn. On Nov. 14, 2011, Sullivan James Kile came screaming into the world at 6 pounds, 8 ounces; he was perfect.

Sullivan "Sully" James Kile was born Nov. 14, 2011.

Sullivan “Sully” James Kile was born Nov. 14, 2011.

When I finally got to see him, he was in the level-two nursery with an IV and oxygen cannula. Robert and I were told that because Sully was early, he just had to “turn the corner,” and that’s why he had low oxygen saturations.

Very early next morning, I surprised to see Sully receiving an echocardiogram. Once the test was finished, the nurse told me the doctor was on the phone. That’s when my world came crashing down.

“Courtney, the Life Flight team from Children’s – Minneapolis is on their way,” he said. “They will be there in five minutes. I think Sully has something wrong with his heart and he is going to need surgery. You should probably call your husband.”

It was like being hit by a wrecking ball. All I remember was barely being able to dial my husband’s number and screaming at him to get to the hospital.

I went back and held Sully. I was rocking him in a chair when Robert arrived, his eyes red-rimmed from crying. Everything was a blur. As the life flight team updated paperwork, the nurse at our local hospital turned to us and said, “Why don’t we take a few pictures, ya know, just in case.”

Just in case? Just in case of what? This was not how this was supposed to go. We were in shock. We took a picture together and then Sully was taken to another hospital a mile away to a neonatal intensive care unit (NICU). His umbilical cord chunk had been removed and replaced with a central line IV. He was given prostaglandins to help his heart function properly.

Shortly after his birth, Sully had to be flown from Duluth to Children's – Minneapolis.

Shortly after his birth, Sully had to be flown from Duluth to Children’s – Minneapolis.

While I was signing releases for the transport, Robert looked at me and said, “I have only held him twice.” The flight nurse from Children’s overheard him and picked up Sully and gave him to Robert for a hug. It’s overwhelming to be a new dad, and after being thrown into a situation like this, it was comforting for Robert to have a moment with his new baby boy. Sully was taken to the airport, and Robert and I set off for the excruciating two-hour drive to Minneapolis.

Shortly after we arrived at Children’s, the cardiologists gave us our answer: Sully had pulmonary atresia with tetralogy of Fallot. When a baby is in utero, the ductus pumps the oxygenated blood to the lungs. Once a baby is born, the ductus closes and the pulmonary valve takes over. Sully’s pulmonary valve was covered in tissue and couldn’t open. When his ductus started to close, he wasn’t getting enough oxygenated blood to his lungs. The prostaglandins they gave him in Duluth were to keep the ductus open. Sullivan was scheduled for surgery the next morning. He was too young for a valve, so they were going to put in a shunt to temporarily pump the blood properly until he was old enough for a valve placement.

Subscribe to MightyWe were transferred to the Cardiovascular Care Center (CVCC). Sully was placed in a huge bed, with wires everywhere; I just wanted to hold him.

As I cried to myself, his amazing nurse looked and me and said, “Do you want to give him a quick snuggle?” I nodded and she expertly picked him up ­– wires, tubes and all – and put him in my arms. It was important to us to have those special moments where we could be parents in the midst of all the chaos.

The next morning, Sully was sedated and prepped for surgery. To say we were scared would be an understatement. We gathered around him and said a prayer. Then they wheeled him away. Waiting for him to get out of surgery was hard, but a social worker repeatedly checked on us, making sure we were OK. Just as I was about to crack under pressure, Sully’s surgeon, Dr. Frank Moga, came and told me that everything went perfectly. I calmly walked to the bathroom and lost it. Relief washed over me.

Sully had heart surgery at Children's.

Sully had heart surgery at Children’s.

We were told that it takes most children 10 days to two weeks to leave the hospital after surgery because they have to learn to eat. Sully shocked doctors by learning to eat immediately. They were impressed by how quickly he was healing. Six days after open heart surgery at 3 days old, we got to take our boy home the day before Thanksgiving.

Six days after open heart surgery at 3 days old, Sully went home the day before Thanksgiving in 2011.

Six days after open heart surgery at 3 days old, Sully went home the day before Thanksgiving in 2011.

We planned how it was going to be when we brought Sully home, but nothing prepared us for our new reality of medicine, an oximeter and scale. I was a germaphobe, coating everyone in hand sanitizer. We were glad to be home, but there was a dark cloud looming knowing that Sully would need a total repair surgery for his valve in the next few months. Luckily, his team at Children’s calmly handled my anxiety and answered all of my late-night phone calls and emails. Every follow-up appointment and conversation brought hope and confidence. The staff at Children’s taught me how to advocate for my son and made me feel that I had a voice. Whenever I would second guess myself, I would remember the surgeon telling me, “We see children every day, but you see yours every day.”

At 5 months old, Sully had to have a second surgery.

Sully appears to be waving at the camera in this photo.

When he was 5 months old, Sully’s cardiologist, Dr. Marko Vezmar, told us it was time for surgery No. 2, which would take place exactly 6 months after his first surgery. The anxiety returned. My saving grace was that I knew we were coming back to a safe place.

Sully Kile

At 5 months old, Sully had to have a second surgery.

As hard as the first surgery was, the second one was far worse. We knew him now. We knew his personality. But once again, the team worked miracles. After eight days on the CVCC, with constant love and support from Sully’s care team, we were sent home.

After his second surgery, Sully was ready to go home again.

After his second surgery, Sully was ready to go home again.

We pulled away from Children’s, and I cried. Six months of living in uncertainty and limbo were over. No more oximeter, no more scales, no more meds; it was done. We could be a normal family– at least our own version of “normal.”

Today, Sully is an active 2½-year-old with shining blue eyes and a heartbreaker smile. He spells his name, likes to sing Zac Brown Band songs and turns his nose up at broccoli. He seems like your average toddler, but Sully is a warrior.

Sully celebrates his second birthday with a cupcake.

Sully celebrates his second birthday with a cupcake.

Sully was destined to be ours and show everyone what a fighter looks like. He‘s the definition of miracle and hero. He’s my best friend, and he’s here because of Children’s. I’m thankful to everyone at Children’s, from the nurses and surgeons who were by his side, to the cafeteria worker who remembered me every morning – they all made those tough days a little brighter.

Sully’s strength has inspired us and others. Because of the support we received from Children’s, Robert and I knew we had to help our fellow heart families and heart warriors. We started a nonprofit for cardiac families in Minnesota called Project Heart to Heart. We’ve been able to help other families and made lifelong friends.

It’s not the norm for most, I guess, but this is our world. I wouldn’t change a thing. I’m the mom of a miracle.

Picture10Many people never get to meet their hero; I gave birth to mine.

Children’s represented at Family Advocacy Day in Washington

By Kelly Wolfe

In late June, Children’s participated in the Children’s Hospitals Association Family Advocacy Day.

The Christiansen family (Eleanor, Tyler, Greta and Wes) joined families from across the country to advocate for funding and programming for children’s hospitals and children with special health care needs. The Christiansen’s used their experience at Children’s to educate and inform our U.S. senators and representatives on Capitol Hill. We were lucky to have them represent us!

Kelly Wolfe is senior policy and advocacy specialist at Children’s Hospitals and Clinics of Minnesota.

Family Advocacy Day 2014 in Washington, D.C. from Children’s of Minnesota on Vimeo.

Photo diary of the trip:

The Christiansens get inspired in front of the U.S. Capitol for meetings on the Hill. The weather was warm and breezy; a perfect day for a lot of walking.

The Christiansens get inspired in front of the U.S. Capitol for meetings on the Hill. The weather was warm and breezy; a perfect day for a lot of walking.

Washington, D.C., is full of wonderful sightseeing opportunities. The Christiansen family takes advantage of some free time by visiting all of the monuments.

Washington, D.C., is full of wonderful sightseeing opportunities. The Christiansen family takes advantage of some free time by visiting all of the monuments.

The Christiansens visit "Honest Abe." The passion they have for advocating for child health almost equals the size of the Lincoln Memorial.

The Christiansens visit “Honest Abe.” The passion they have for advocating for child health almost equals the size of the Lincoln Memorial.

Future presidents? We hope so! Greta and Wes take their turns at the president’s desk at the White House Gift Shop.

Future presidents? We hope so! Greta and Wes take their turns at the president’s desk at the White House Gift Shop.

Greta and Wes certainly are out of this world! They had a great time checking out the astronauts at the Smithsonian Air and Space Museum.

Greta and Wes certainly are out of this world! They had a great time checking out the astronauts at the Smithsonian Air and Space Museum.

Batman flew by to say a special hello to Greta and Wes at the Family Advocacy Day Celebration dinner. Complete with a band, dancing, caricatures, face-painting, photo booths and games, the event gave families one last chance to exchange trading cards and have some fun before a full day of meetings on Capitol Hill.

Batman flew by to say a special hello to Greta and Wes at the Family Advocacy Day Celebration dinner. Complete with a band, dancing, caricatures, face-painting, photo booths and games, the event gave families one last chance to exchange trading cards and have some fun before a full day of meetings on Capitol Hill.

The Christiansens pose with Congressman Eric Paulsen under his Minnesota-made canoe.

The Christiansens pose with Congressman Eric Paulsen under his Minnesota-made canoe.

After a special breakfast of Minnesota Mahnomen porridge in U.S. Sen. Franken’s office, Greta cozied up next to him as he listened to the Christiansens' moving story. It’s not every day you get to sit on a U.S. senator’s couch.

After a special breakfast of Minnesota Mahnomen porridge in U.S. Sen. Franken’s office, Greta cozied up next to him as he listened to the Christiansens’ moving story. It’s not every day you get to sit on a U.S. senator’s couch.

Eleanor talks to Congressman Keith Ellison about the importance of funding programs like the Children’s Hospital Graduate Medical Education (CHGME) program, which provides funding to train future pediatricians and specialists like the ones that treated Greta.

Eleanor talks to Congressman Keith Ellison about the importance of funding programs like the Children’s Hospital Graduate Medical Education (CHGME) program, which provides funding to train future pediatricians and specialists like the ones that treated Greta.

Laser in action: See how Gavin’s tumor met its match

Gavin Pierson (left) and Joseph Petronio, MD, visit during a photo shoot at Children's – St. Paul on Monday, June 16, 2014.

Gavin Pierson (left) and Joseph Petronio, MD, visit during a photo shoot at Children’s – St. Paul on Monday, June 16, 2014.

In the two years since Gavin Pierson’s brain tumor, which he calls “Joe Bully,” was discovered, he has undergone 17 surgeries. A combination of craniotomies and the Pfizer drug, palbociclib, had been managing the growth of Joe Bully, but not decreasing its size. Gavin and his family were growing tired and frustrated with invasive surgeries, and Gavin wasn’t bouncing back as well as they hoped.

Enter Visualase.

Visualase is a laser used for neurosurgery and is guided by MRI images to precisely target areas of the brain that were previously thought inoperable. After making a 3-centimeter incision, Joseph Petronio, MD, and his team guided a small laser fiber directly to Gavin’s tumor. Children’s is the only pediatric hospital in the Midwest using Visualase, and Gavin is the only patient in the country to use this technology to treat a mature teratoma brain tumor.

Learn more about how Dr. Joseph Petronio used the Visualase laser:

Subscribe to MightyNot only did this technology target and dissolve a significant portion of Gavin’s tumor, it’s also prohibiting re-growth – stopping Joe Bully in its tracks. The laser is so targeted that the brain tissue surrounding the tumor was unharmed, making for a quick recovery. Within 12 hours, Gavin was sitting up, eating and laughing with his siblings and parents. Gavin went home the next day and was back to school within four days.

These types of minimally invasive surgeries have incredible benefits for Children’s patients. Since obtaining Visualase in October 2013, Children’s has treated patients as young as 12 months for epilepsy and other types of brain tumors. Tools like Visualase are making tumors we once thought were inoperable – operable.

Gavin vs. Joe Bully: First-of-its-kind laser surgery shrinks tumor by more than 40 percent

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

The Piersons (from left), Steve, Gavin, Nicole, Grace and Gage, have been through a lot in the past two years.

If you’ve been following 8-year-old Gavin Pierson’s story, you know he and his family have been through a lot. In 2012, Gavin was diagnosed with a mature teratoma brain tumor.

Since then, he has undergone numerous craniotomies and he and his family have dealt with big drug companies to fight his brain tumor, which Gavin refers to as “Joe Bully.” Unfortunately, Joe Bully is a particularly tough tumor, located in an area that is difficult to operate on and comprised of hard, “concrete-like” tissue. While Gavin’s prior treatments made progress, Joe Bully kept growing back.

give_gavin_blogBut it appears that Gavin’s neurosurgeon, Joseph Petronio, MD, may have found Joe Bully’s weak spot. Over the past eight months, Gavin has undergone two Visualase laser surgeries, an MRI-guided procedure designed to incinerate the tumor. He’s the first patient with a mature teratoma to ever use Visualase – and it may have stopped Joe Bully in its tracks.

Children’s and the family also successfully petitioned pharmaceutical company Pfizer to grant Gavin access to an experimental drug, palbociclib, to help control the tumor’s growth. Gavin is the youngest patient to use palbo.

We’re happy to announce that a recent MRI scan showed Gavin’s formerly peach-sized tumor has shrunk more than 40 percent. Even better? There are no signs of regrowth.

Gavin’s courage and strength inspire us every day. Thank you, Gavin, and congratulations.

Learn more about Gavin’s story and surgery:

The road to recovery: Pediatric cancer services

Each year, close to 12,500 children in the U.S. are diagnosed with cancer. Among them who live in the Upper Midwest, more than 70 percent are treated by Children’s Hospitals and Clinics of Minnesota. This week we shared Jenna Carnes’ cancer journey on Twin Cities Moms Blog. Jenna is one of many teens we see in Children’s Cancer and Blood Disorders Clinic each week, and just like every pediatric cancer patient, her journey is a unique one.

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

Jenna Carnes (left) and her mother, Barbara, enjoy a Minnesota Twins baseball game at Target Field in Minneapolis. (Photo courtesy of Barbara Carnes)

“Like all of our patients, we want Jenna to still be a kid and not to have to grow up too quickly because of the disease she’s dealing with,” said Dr. Joanna Perkins, Jenna’s treating physician in the Cancer and Blood Disorders Clinic at Children’s. “With the suite of treatment options we offer, Jenna’s been able to get back to being a normal teen.”

Beginning with the Child Life department, Jenna utilized many of Children’s support services to help her in her healing journey. From how to talk about cancer with her friends at school to going to surprise Minnesota Twins baseball games with her family, Jenna said her child life specialists made each day that she was at the hospital just a little easier. This was a welcome relief for her family.

“What makes Children’s different than any other hospital are the services we offer that go above and beyond standard inpatient care,” said Dr. Perkins. “From the supportive care – ranging from physical therapy, psychology and nutrition specialists, music therapy, massage and pain and palliative care – to special events geared towards the whole family, we try to make the time kids and families have to spend in the hospital as good as it can be. A lot of kids appreciate the simple things, too – big TVs and video games.”

In addition to Children’s in-house services, many patients (including Jenna) go to Camp Courage in Maple Lake, Minn., to “just be a kid” for a week each summer. The camp also provides patients’ families with a much-needed break. With Children’s staff physicians and nurses, onsite, to administer medication and keep close watch on their patients, patients and their siblings take part in time-honored camp traditions and let loose for the week.

“Kids of all ages are there, and we’re all going through something really similar,” said Jenna. “There are no strange looks.”

As Jenna and her family prepare to celebrate the end of her chemotherapy treatments, Jenna’s care team at Children’s will be by her side, cheering her on at her end-of-treatment party on June 12. Soon, Jenna will be a part of Children’s Destination STAR (Surveillance and Testing After Recovery) Clinic, which assists her with the transition to life after cancer therapy. She’ll work with Children’s Health and Wellness Team, consisting of staff members from oncology, nutrition services, physical therapy, psychology and child life, as well as her primary care physician for wellness visits to make sure the cancer does not return.

“Going to the hospital for cancer treatments will never be fun,” said Jenna. “But, I’m honestly going to miss coming to Children’s – it’s almost become a second home.”

Visit Children’s Hospitals and Clinics’ Cancer and Blood Disorders Clinic for more information. Children’s first annual Shine Bright Bash on Sept. 13 is to celebrate and support the advancements in pediatric cancer and blood disorder care.

Child free of seizures after laser procedure

Jack Healy, seen with his family, including his mother, Shannon, had a rare, benign tumor called a hypothalamic hamartoma.

By Shannon Healy

Our sweet baby boy, Jack, was born Oct. 18, 2012. When he was only a few weeks old, we started noticing he was having “episodes.” His body would tense up and he would scream like he was in pain. These continued to worsen as he got older and got to the point where he would wake up with them every time he tried to go to sleep. He also began having episodes where he would appear to be laughing but still looked terrified and in pain.

For months, we sought out different specialists to try to diagnose our baby’s episodes. Finally, in April 2013, we were referred to the neuroscience program inside the St. Paul campus of Children’s Hospitals and Clinics of Minnesota. Still unsure of what his episodes were, the staff began following him closely and keeping a close eye on his other symptoms (a large head and low muscle tone).

In August 2013, Jack had an MRI on his brain. Within days, we had a diagnosis: Jack had a tumor on his hypothalamus and his “episodes” were gelastic and dacrystic seizures associated with the tumor. This time was so overwhelming for us, but we finally knew what Jack was battling.

Jack was prescribed a few different seizure medications, but his seizures continued to worsen. At the peak, he was having up to 15 seizures per day; more severe and longer in duration than when he first started having them. They were taking a toll on Jack and our family. He has two older sisters who adore him, and they would get extremely upset every time he would have one of his “fits,” as they called them.

It seemed like the seizures were affecting every aspect of Jack’s life and development. He began refusing all solid foods and would take only bottles of milk. His seizures constantly would interrupt his sleep. He was having severe delays in his gross motor development and also was falling behind in his speech. Defeat and hopelessness were setting in for us.

After watching the tumor for three months, the neurology team at Children’s was able to confirm that Jack had a rare, benign tumor called a hypothalamic hamartoma. We were told that these tumors occur in only one in 1 million people, often appearing in young children. According to Meysam Kebriaei, MD, Children’s neurosurgeon, that number could be underestimated since hypothalamic hamartomas can be missed without high-resolution MRIs.

In December, we met with Dr. Kebriaei, who discussed a new surgical procedure called Visualase, an MRI-guided, minimally invasive laser procedure. He thought Jack would be a great candidate.

Jack would be the first patient at Children’s with a hypothalamic hamartoma to undergo a Visualase procedure. We were thrilled to have this option available to us and made our decision to proceed before we left the clinic that day.

We also learned that Children’s is the only institution in the Midwest to perform Visualase ablation for hypothalamic hamartomas. Dr. Kebriaei explained that Visualase would allow him to treat Jack’s tumor in such a way that will minimize the risk and decrease his recovery time, when compared to the standard, open surgical procedure. 

Jack had seven seizures the morning of his surgery.

Jack’s surgery was scheduled for Jan. 10. He had seven seizures the morning of his surgery; a strange reassurance to us that we had made the right decision. The surgery took the entire day and we were updated by Children’s staff throughout the process. We never left the waiting room.

At the end of the day, Dr. Kebriaei told us that the surgery had gone perfectly. The tumor had been completely disconnected from Jack’s brain. We spent two nights in Children’s ICU with Jack and, amazingly, he was seizure-free.

After going home, Jack experienced an unexpected drop in his sodium level, which required a readmission to Children’s. He spent 2½ weeks in the hospital, where he continued to receive extraordinary care and, in spite of this complication, continued to be free of his debilitating seizures.

It has been almost four months since Jack’s surgery, and he has not had any seizures. It still is hard to believe, considering he had these seizures daily for 15 months. Sometimes, I still expect him to be having one when he starts laughing, but then I realize that he is laughing because he’s so happy!

Jack has been seizure-free since undergoing the Visualase treatment.

With the seizures gone, we now are able to focus on Jack’s development. He is having therapy multiple times each week, and we already are seeing progress in his eating, speech, motor skills and sleep patterns. Just within the past week, Jack has been standing, walking and pushing toys through our kitchen. We are hopeful these parts of Jack’s life only will continue to improve.

This surgery has been life changing for us. We learned later that Jack is one of only 50 people in the country who have undergone Visualase ablation for a hypothalamic hamartoma. After months of feeling grief and hopelessness, we have a renewed hope that our sweet boy is going to have a healthy and happy life. As Dr. Kebriaei told us at Jack’s last appointment, “He’s about ready to take off.”

The neuroscience program at Children’s Hospitals and Clinics of Minnesota unites hundreds of experts in a common mission. We care for more neurology patients, more brain tumor patients and more epilepsy patients than any other hospital in the region. And we do it with some of the most advanced treatments and technologies available today.

Doctor teaches patient’s third-grade class about science of sound, hearing

Leah Tygum, MD (back row, left), visited the third-grade classroom of patient Sophia Nelson (middle row, second from left) at Redtail Ridge Elementary School in Savage to talk about the science of sound and hearing.

Working together was the spark that started a fire of learning and understanding for a class of third-grade students this winter. A collaborative project between staff at the St. Paul campus of Children’s Hospitals and Clinics of Minnesota and Redtail Ridge Elementary School in Savage helped students learn about the science of sound and hearing while creating a lifelong lesson that went well beyond the typical third-grade science curriculum.

“What’s that thing in your ear?” is a question Redtail Ridge third-grade student Sophia Nelson often has heard from classmates. Diagnosed at age 6 with moderate to severe hearing loss in her left ear, Sophia has worn a hearing aid for the past two years, and it has raised questions from several curious friends during that time.

Third-grade teacher Stacy Kodada (left) takes a turn using a small stethoscope placed to Sophia Nelson’s hearing aid.

This winter, when Sophia’s classroom teacher, Stacy Kodada, introduced a science curriculum that included studying the physics of sound, Kodada and Sophia connected about inviting Sophia’s audiologist, Leah Tygum, MD, to visit with Sophia’s classmates. Dr. Tygum, affectionately referred to as “Dr. Leah” by Sophia, has helped transform Sophia’s hearing-loss journey from one that began at diagnosis with fear and concern to one that now is characterized by empowerment and confidence. Since first meeting Sophia, Dr. Tygum has helped provide Sophia with resources to help her – and fellow students – better understand what some might consider Sophia’s “disability.” When invited by Kodada to visit with the third-graders, Dr. Tygum seized the opportunity to help Sophia better educate her classmates on hearing loss and hearing aids.

Prior to the on-site visit, students shared their questions about hearing loss and hearing aids with Sophia and her teacher. Their questions were honest, at times simple, and revealing in terms of a young child’s understanding of those who suffer hearing loss. Students posed several questions, including:

  • What happens inside the ear when you can’t hear?
  • How do you get the sound from the hearing aid into the eardrum into the brain?
  • How do you make a hearing aid?
  • How do you know if you need a hearing aid?

Sophia Nelson (left) had Leah Tygum, MD, visit her third-grade classroom at Redtail Ridge Elementary School in Savage.

On the day of her visit, Dr. Tygum was greeted by a room of students buzzing with excitement and questions. She facilitated more than 90 minutes of hands-on, interactive learning about hearing. Attempting to address all questions, she talked about the science of hearing, what goes wrong with hearing loss and how hearing aids work for those who need them. Using Sophia as a teaching partner, Dr. Tygum took the lesson well beyond Q&A, leading students through a variety of engaging learning activities. Dr. Tygum made a mold of Sophia’s inner ear while the students watched, just as she would do in her office to properly fit a hearing aid. To increase involvement, she then gave students their own individual balls of molding material so they could feel how it hardens into a shape in minutes.

To help make the hearing aid even more “real world” and understandable, the children were each given the chance to use a small hearing aid stethoscope which allowed them to hear sounds in the classroom the way Sophia does when she wears her aid. The exercise proved popular. After listening, children raced back into line in hopes of getting a second chance.

The classroom learning experience helped students understand the science of sound and hearing, but for Kodada it went beyond that.

“Having Dr. Leah come to the classroom allowed the students a different insight into others with hearing disabilities,” Kodada said. “The hands-on experience and real-life demonstration is a wonderful way for students to learn and then be able to apply it to their own life situations.”

While Sophia will probably continue to get questions throughout her life about her hearing loss, she’s certain that none of this year’s classmates will ever ask again “what’s that thing in your ear?”

Photo gallery: Leah Tygum, MD, visits third-grade class at Redtail Ridge Elementary School in Savage (Photos by Michael Nelson)